I am sure you have heard of the phrase, “Well at least you have your health.” People use these words as encouragement after a tragedy or loss of a friend or loved one or maybe even for themselves. Yet, what if you don’t have your health? What if life has thrown you a curve ball caused by illness or injury? What if your body went from healthy to having a disability, sometimes suddenly?

As with any loss, a person whose life is changed by tragedy and disability usually experiences the five stages of grief: denial, anger, bargaining, depression and acceptance.

The question lies in how does one move toward acceptance when his or her world has been rocked by illness or injury? I believe it is found in the word “hope.” What is it? Merriam-Webster defines hope as: “to want something to happen or be true and think that it could happen or be true.” It seems like a platitude: “Let’s all hope for better days.” What if better days never come? Can we still have hope? I say, “Yes!”

I believe hope is really an action and not just a feeling for something better. Hope is looking at the difficulties of life and still smiling. Hope is when someone in unbearable pain comforts someone else going through a difficult time. Hope is when someone with a disability does something amazing that seems to be insurmountable. I think of Mandy Harvey.

Born in Cincinnati, Ohio 21 years ago, Mandy Harvey began her music passion as a four-year old girl.

Hearing issues followed Mandy from birth and led to several surgeries. Relocated to Colorado as a young girl, she joined several school choirs and began singing lessons. Mandy participated in Longmont High School’s Women’s Choir, Bel Canto and Chamber Singers. She sang 1st soprano, 2nd soprano and 2nd alto. Choir director Adam Cave awarded Mandy Top Female Vocalist of 2006 just before graduation. Mandy’s name is still on a plaque in the choir room.

In the summer of 2006, Mandy applied to Colorado State University and the University of Northern Colorado. Recognizing her potential, both programs quickly accepted her. Mandy enrolled in Colorado State and majored in Vocal Music Education, seeking to become a college instructor. Just after starting classes, Mandy noticed she couldn’t hear recordings. Six months later, all her residual hearing disappeared.

Mandy left Colorado State and began to pursue an interest in Elementary Education. A chance encounter with former high school and college voice teacher Cynthia Vaughn led Mandy to revive her music passion. Cynthia introduced Mandy to pianist Mark Sloniker at Jay’s Bistro in Fort Collins.

With restored confidence, Mandy created her first CD, Smile, in 2009, her second CD, After You’ve Gone, in 2010 and her third CD, All of Me in 2014. Mandy has also performed multiple times at the renowned Kennedy Center, including as one of the 2011 winners of the VSA International Young Soloists Competition. Mandy released her new single, The Script on December 20, 2014 with recording artist and acquired savant, Derek Amato.

Hope is never lost; it is something you have to hold onto to stay strong. And it is something that we have a duty to show and give to others. It ‘keeps life moving’ and pulls us out of any dark situation. Continue to hope and make your dreams a reality.

Another person who fuels her life with hope is ultra-athlete, Diane Van Deren.

A state champion golfer who played pro tennis in her 20s, Van Deren’s athletic career was seemingly cut short when she began suffering grand mal seizures and had to leave the tour. The effects were devastating for the young mother of three, but she developed a sense that alerted her a seizure was coming on. To ward it off, she would grab her shoes and head out to run for miles on her family’s Colorado ranch. She became one of the world’s top ultra-runners, keeping her medical condition secret from fellow competitors and race organizers…

At 37, doctors isolated the cause of Van Deren’s epilepsy and removed a kiwi-sized piece of her brain. She hasn’t had a seizure since, but there have been neurological side-effects, including memory loss and difficulty tracking time and direction. She also doesn’t feel pain like most people, a useful quirk as an ultra-runner who taxes her body to its limits.

Van Deren has won throughout North America, including the Canadian Death Race and the Yukon Arctic ultra, running 430 miles across frozen tundra pulling a provisions sled.

Running ultras gives me a platform to share my story and give people hope and not give up in the midst of their trials,” says Diane Van Deren. “I feel I’ve been given a gift for a reason and, if I didn’t share it, it would be very selfish.

Hope is truly believing in the human spirit. As humans, we overcome incredible odds and difficulties. For someone like Diane, it is running hundreds of miles in the freezing cold of the Arctic or living with frequent seizures or memory loss. To others, the ultra-marathon is putting two feet on the floor after a night of horrific pain and making it to the couch only to collapse again. For someone like Mandy, it may be finally realizing amazing dreams, having them dashed by disability and then finding out that the gift returned to bless others even more.

On our Facebook page, we often have Thankful Thursdays and I am so moved by the comments of gratitude for even the seemingly smallest triumphs of making a sandwich, spending time with a friend or getting the mail. I believe that the greatest hope is knowing that we are in this human race together. We can hold each other up. We can give each other hope, and we can be the hope others’ need. Together, we can hope and envision a world where people living with illness, pain and disability will be Invisible No More.

Imagine a world where people have the time to spend with, learn about, and empathize with people faced with an unforeseen catastrophe. Imagine a world where family and friends would unite to take challenges head on while supporting one another through the hardships of life. The synergistic effect of embracing “we” instead of “I” would create a place of belonging for all. Below, I will share four important keys to making the world a more empathetic place!

Mindfulness: The first approach in advocating for an empathetic world must take place from within by practicing mindfulness. We can better help each other if we live by the motto: “Our actions taken should be in the best interest of others.” What does mindfulness mean? Mindfulness means being aware of the world and all of its wonderful opportunities. Mindfulness is acknowledging individuals, welcoming individuals, and accepting individuals. Mindfulness is listening carefully to how our “self” interacts with others. Mindfulness is being attentive to how we make others feel. Mindfulness is engaging in conversation with our self in a positive tone. Mindfulness is allowing ourselves to serve a greater good. Mindfulness is discovering a greater purpose in life. The state of mindfulness is awareness.

Compassion: People need compassion in order to survive hardships! What is compassion? Compassion means giving of your time not for a few minutes or for a few hours, but for days, weeks, months and years. Compassion means being there for your loved one when they are at their lowest point in life. Compassion means wiping away their tears and soothing their pain. Compassion means knowing who your loved one truly is even when no one else does. Compassion means being an advocate for your loved one when he/she isn’t able to advocate for themselves. Compassion means not giving up on your loved one. It means sitting by their side to calm their sorrow, pain, and fear. Compassion means going the distance. It means believing. Compassion means validating your loved one. Compassion is value. Compassion is a choice. Compassion is a kiss and a hug. Compassion is a well-meaning thought and wish. Compassion is healing. Compassion is kind. Compassion is powerful. Compassion is love.

Acceptance: People need to be accepted in our world and especially those living with an invisible illness! What does acceptance mean? Acceptance is welcoming. It is letting go of your disappointments. It is seeing the positive. Acceptance is loving the person as they are and not trying to change or fix them. Acceptance is not blaming. It is not demanding. Acceptance is understanding. Acceptance is inclusion. Acceptance is love. Acceptance is what every person needs especially when going through a chronic illness. Acceptance is checking in with the person that is struggling. Acceptance is sharing a moment in life together. Acceptance is being kind. Acceptance is having time. Acceptance is approval. Acceptance is sticking around.

Forgiveness: Forgiveness is important to heal and move forward in life! We need to learn how to forgive ourselves and others! What is forgiveness? Forgiveness is letting go of the pain and suffering others may have caused you. Forgiveness is letting go of a person’s wrongdoing, and letting go of the differences with those who may have ill will towards you. Forgiveness is a release from the pain which offers the feeling of being free. Forgiveness opens doors for new opportunities. Forgiveness is that light at the end of the tunnel. Forgiveness is hope. Forgiveness is turning a new leaf, a new chapter in life. Forgiveness is accepting your faults and loving yourself. Forgiveness takes time. Forgiveness sets you free. Forgiveness paves the way for a better future, a future that only you can create. Forgiveness is realizing a future with no limits, no setbacks, and no guilt. Forgiveness is being vulnerable in order to build strength. Forgiveness is liberating!

Through my advocacy efforts for Invisible Illnesses, I hope we all can create a more empathetic and caring world by being more mindful, compassionate, accepting, and forgiving.

We all belong! Help spread this message by clicking the share buttons!

Alanna has spent the past seven years dedicating her life to raising awareness for Kleine-Levin Syndrome (KLS) in an effort to help other sufferers. Alanna’s focus has been to raise funds for research, engage and connect with the community, and facilitate the KLS Foundation website.
Alanna is writing her KLS memoir. You can read a FREE introductory section of her book here: http://alannawonglife.com/real-life-sleeping-beauty/
Alanna has been featured in numerous media outlets including: Anderson Cooper, ITV London, Sunday Night (Australia), The Sun, The Daily Mail, and Seventeen Magazine (Singapore).

But you don’t look sick.” “But you LOOK good.” “It’s all in your head.” “You just want attention.”

When most people are sick with the flu or a fever, they become pale and droopy and their hair is in a tussle. Therefore, when we meet someone who tells us he or she is ill or has an invisible disability, but he or she does not appear to be sick or in pain, we are often perplexed. Despite their appearance, we must realize that there is a difference between having a temporary cold or the flu and living day after day with a chronic illness or in chronic pain.

Many chronic conditions and disabilities are not as noticeable as a bad case of the flu. For instance, a person can battle symptoms such as extreme fatigue or cognitive impairments on the inside, even though he or she may appear healthy and well on the outside. Just the same, a person can have horrible pain or dizziness, despite the fact that he or she may seem strong and able.

IDA Ambassador Hannah Andrusky is someone who looks amazing and healthy on the outside while battling from injuries on the inside. In January of 2012, a serious car accident sidelined Hannah’s career as talk show host and stylist, as well as her confidence and self-esteem. Her ‘invisible disability‘ of concussion syndrome left her depressed, exhausted and even suicidal. Hannah’s medications caused her to gain weight and have severe mood swings, contributing to her lack of equilibrium on many fronts. A single mother and a daughter, her caretakers often had enough of the resulting behaviors.

Oftentimes, the disbelief is magnified because the person with the illness tries to put on a brave “I’m doing great” face, especially around doctors. Nobody wants to look sick. But Hannah learned that she needed to show how the accident had really impacted her, so that her neurologist could see the real extent of her injuries. Hannah writes in Living the Invisible Disability:

“I was very frustrated. He had always told me he would keep me under observation for a year and see what happens. It had been a year and a half since the accident. This doctor saw me once every six weeks for 10 minutes. I was pretty sure I knew my body better than he did. Something was still very wrong and without the proper information, I didn’t know how to heal myself. I dragged myself to his office. This time, though, I didn’t dress well or fix myself up like all the previous visits. Let him see me as I really was.

Well, it wasn’t pretty. I barely had the energy to get myself there. No makeup, no pretty dress; I showed up looking the way I did at home. One of the problems with this kind of injury is when you look good on the outside, everybody just says, “What’s wrong with you? You look fine.”

I was lying on the table when he entered the exam room. I wasn’t going to put on a brave face this time. I told him I was sorry but I didn’t have the energy to get up. It was true.

My neurologist sat down, looked at me, put his hand on my knee, and said, “Hannah. You’re going to be okay. I think you’ve had some situational depression. There’s a lot going on in your life….” He was so condescending; I nearly went through the roof.

I laid into him. I was entirely done with feeling like he was discounting what I was telling him. “I had suicidal thoughts last week. Again. What is wrong with me? I… want… the PET scan!”

Without a word he got up and started typing into his laptop. “Okay. I’ll get you the PET scan.”

We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing his or her situation or trying to pull the wool over our eyes, because to us he or she looks fine. Even professionals struggle with believing the person’s illness and injuries. I find that the real experts are the ones who live daily with illness and pain, year after year.

So how can we help? As we have learned, it is difficult to recognize there is a need by simply looking at someone with an illness or injury. On the outside, they may appear physically able to accomplish tasks because their fatigue, pain and other symptoms are on the inside.

As a result, we must learn not to disregard what our loved one is telling us simply because we cannot see the damaged organs, cells, muscles, bones and nervous systems from the outside. Thus, the first thing we must do is to learn to listen, without discounting what we cannot see.

We often fear that helping others will be time consuming. We think that to make a difference, we would have to cook all their meals, run all their errands and clean their house every week. Even the simplest things can go a long way in helping them conserve energy, such as making lunch for them once a month or picking up some groceries or driving them to an appointment.

Many people are genuinely willing to help, but do not know where to begin. Because of this, we often offer by saying, “Call me if you need anything.” This is a great effort to reach out, but unfortunately, it does not work. For that reason, we cannot put the ball in their court and expect them to call us. So, how can we help if they will not ask when they need it?” Simple…we call them!

As a whole, we must remember to listen, believe what we hear, allow them to say, “No” and offer specific help that is convenient for us and them. I know Hannah’s family and friends helped her when possible with her recovery.

Many people have allowed their illness and disabilities to be a catalyst to help others on their journeys and Hannah leads by example. With faith and a keen sense of knowing she experienced these things for a purpose, Hannah began acknowledging her struggle publicly, eliciting responses from those with similar issues due to Post Traumatic Stress Disorder (PTSD), illness or the basic trauma of living in our changing world. She chose to become a student of what worked for her in her recovery process, perspective and the perceptions of the gifts she knew she was intended to pay forward. Now, Hannah speaks, teaches, coaches and has authored the very soon to be released book Living the Invisible Disability – Coping with Post Concussion Syndrome, Traumatic Brain Injury & Depression. You can learn all about Hannah on her site, Hannah Talk.

There are countless people who live with invisible disabilities. They are all around us. Even though we do not see their illness or pain, we do see them. Let’s all help them become Invisible No More.

Have you ever heard the words, “Well, what do you expect?” when someone learns that a person is living with illness or pain caused by an injury from their job or hobby. Maybe that person’s job was full of risk, such as working in a gold mine as highlighted on the Discovery Channel’s show Gold Rush, or on a crab boat similar to Deadliest Catch.

Maybe they played sports and received multiple concussions and are impacted by the long-term effects or repeated head injuries. Former Colorado Avalanche hockey player Scott Parker knows this firsthand. According to Adrian Dater, a reporter for The Denver Post:

Scott Parker lies in bed, dreading what might come next. Soon after awakening, his ears ring so loud they seem like the equivalent of 100 fire alarms. Waves of nausea wash over him until he vomits. His eyes glaze over.

One of the toughest men to ever play in the NHL is knocked out, not from an opponent’s punch, but from simply getting out of bed.

Nearly six years since he retired from the NHL as one of its toughest enforcers, Parker is finding everyday life a more fearsome opponent than any he dropped the gloves against. Some days he feels fine. Many days he finds himself paying the price of years of blows to his head. The 6-foot-6, 245-pound Parker — nicknamed “The Sheriff” as a player — frequently is debilitated by seizures. He has to wear sunglasses most of the time because too much light can bring on headaches that leave him incapacitated. When Parker looks down, he cannot “track” objects. Otherwise, he gets dizzy and nauseous.

Or maybe it’s working as a stuntwoman, such as Leslie Hoffman, who noted:

As a stuntwoman, I expected to get bumps and bruises, much like any other physical career (i.e. football players, hockey players, etc.) I also have had explosions go off near me or actually had small explosions put on my body to make it appear as if I had been shot, much like our soldiers.

Little did I know, whether the director wanted me to hit my head, like the dead cook in Clue, or I made a slight miscalculation on my part and ending up hitting my head, that I would end up with PCS (Post-Concussion Syndrome), TBI (Traumatic Brain Injury) and PTSD (Post-Traumatic Stress Disorder).

When people are injured doing high risk jobs and we find they are suffering from injuries sustained as a result of those jobs, we have a tendency to not have compassion for them because “it’s their own fault.” Furthermore, because of the invisible nature of their illness, we often do not believe them. If we do actually believe them, we either blame them causing them shame or dismiss their issues altogether.

Yet, if we know the apparent cause of illness and injury, do we show compassion and care? Or do we turn away and let these individuals fend for themselves? Most people do not take on risky jobs with the intent of becoming permanently injured and disabled. They use all kinds of safety measures and equipment to lessen the risk of injury.

What about the risk of driving a car? I think of those who were injured due to vehicle crashes, such as Dr. Margaret Ferrante and Hannah Andrusky, or from a rock climbing accident such as Angela Pierce. If they were at fault for causing the accident, would we look differently at them and dismiss their injuries just like those who participate in risky jobs and hobbies?

We may believe someone more if there appears to be an obvious reason for their illness or pain. Imagine the lack of belief when a cause of a person’s illness can’t be determined.

In a court of law, people who are charged with a crime are supposed to be afforded the opportunity to be proven guilty. The prosecutor, jury and judge determine their guilt based upon facts beyond a reasonable doubt. If there is reasonable doubt, lack of evidence or no eyewitness testimony, the accused is allowed to remain innocent and go free. Even though the evidence may appear to point to guilt, it must be proven by experts in the law and not by armchair quarterbacks such as us.

This brings up a question in regards to the disability and illness community. Why do people who live with illness, pain and disability and whose symptoms are invisible tend to be looked upon as guilty of faking or lying about their situation? It seems that they are guilty until proven innocent. Although doctors have already determined their condition by spending time with the patient and putting them through tests, we still often believe we know better.

Sometimes our loved one who is suffering has yet to be diagnosed and, in this case, we think, “Well, if a doctor can’t figure it out, then maybe the person really is faking.” Yet, even doctors admit that many patients have complicated cases and a diagnosis may take years and even decades to determine. During this time, the person living with the pain and illness daily continues on in misery while having their symptoms dismissed by friends and family.

Are we all really such experts in accessible parking laws that we can make judgments whether the person parking there has the right to do so? Are we aware of the legal forms and medical proof needed to obtain a placard or accessible license plate, not to mention the shame of having people stare and even yell at you for parking in a space for which you have the right?

What if we see someone in a store with a service dog? Are our first thoughts or words out of our mouths, “Hey, I wish I could bring my dog with me everywhere, too” or “No pets allowed”? A service dog is an assistive device just like a cane or wheelchair and allows the person to function in society with some sense of normality. We have no idea how a person’s life is benefitted by a service dog or all of the amazing services the animal may perform, such as helping with balance, fetching dropped items and alerting to possible seizures or sudden drops in blood glucose levels.

It is time to let our loved one know that we believe him or her when they say they are in pain or have a disability, even though we do not see it with our own eyes. They are the eyewitnesses living every moment in a body wracked with pain and illness. They need to know we love them. We need to take their word when they state they can or cannot do something. We need to ask them how we can help, versus thinking we are their doctor, lawyer or other disability expert, or even them. We should not ignore them or dismiss them even when their actions might have played a part in their injury or disability.

“I’m not really afraid. I just want to get some answers,” Scott Parker said. “For me to have to explain the symptoms to people, they don’t know. I sometimes say, ‘Let me give you 20-plus concussions and then we can talk.’ You just want someone to believe in you, for someone to say, ‘You’re not going crazy, it’s not you.’ They haven’t pinpointed what’s wrong. It’s not conclusive.”

Let’s not be judge and jury and condemn those in pain and suffering to loneliness and isolation, but be their friend, comforter, champion and caregiver. Most people do not ask to be ill and in pain; it is thrust upon them and it is very real. Others may be guilty of participating in risky jobs and hobbies, yet their pain and suffering is also real. Let’s treat them all the same way by helping them to become invisible no more.

Everyone has a story to share – this is what connects us to one another, no matter our family background or where we come from. No matter what you’ve been through in your life, telling your story is the first step to creating meaningful relationships and building a strong support system.

People with invisible illnesses are often misunderstood, blamed, mistreated and judged. When we don’t acknowledge the truth of such illnesses, we are telling these people that they don’t matter or that they have no value. How will people heal if others don’t want to acknowledge that they have an illness in the first place? Society needs to understand invisible illnesses (many of which are neurological-affecting the brain and nervous system) are like any other condition that affects a different part of the body. Until this happens, people with invisible illness will continue to be stigmatized.

By sharing our personal experience with illness, we hope to build bridges with others around us, so that they will know and understand us better. Hiding our illness can cause embarrassment and leave us feeling ashamed about it. There is no fault in being faced with an illness. It is our truth; and how can we form real relationships with others if they don’t know what we go through?

I also believe that talking about your illness can help with the healing process. There is so much freedom in telling the truth. You no longer have to hide or pretend. And by opening up, you also reach out to others who may be going through a similar experience, and that helps you realize that you’re not alone. The more you share, the more you inspire others to do the same. And when you heal together, you heal faster. Chronic illness can make a sufferer feel alienated, but when we share our experiences with the illness, we open up new connections with others just like ourselves, and we don’t feel so alone anymore. Knowing that we are not alone is such a comforting feeling and it can definitely help the one struggling get through a difficult period. When you share, you are also helping yourself release bottled-up emotions like anger, frustration and fear. I’ve personally found that, the more I share and talk about my condition, the less of an effect it has on me.

Sharing your story is also a great way to spread awareness. Awareness, I believe, is what leads to acceptance. When there is no acceptance, there is very little support and people tend to get left behind. Opening up about your illness can help change this. The more awareness about your condition, the less isolated you will feel. And who knows, you might even inspire others to get the help they need. With acknowledgement comes acceptance.

Alanna has spent the past seven years dedicating her life to raising awareness for Kleine-Levin Syndrome (KLS) in an effort to help other sufferers. Alanna’s focus has been to raise funds for research, engage and connect with the community, and facilitate the KLS Foundation website.
Alanna is writing her KLS memoir. You can read a FREE introductory section of her book here: http://alannawonglife.com/real-life-sleeping-beauty/
Alanna has been featured in numerous media outlets including: Anderson Cooper, ITV London, Sunday Night (Australia), The Sun, The Daily Mail, and Seventeen Magazine (Singapore).

For those of you who know me, you know I am a slow and steady marathon maniac. For the past decade, I run a couple of marathons a year trying to someday run a marathon in all 50 states. For me marathoning is a metaphor for my life: committing to audacious adventures and figuring out how to get there step by step, finding dedicated partners to jog along with me, and riding the adrenaline rush when crossing the finish line. The other metaphor, which has been a focus of my year, is mile 17.

At mile 17, I lose hope. I am a long way in with a long way to go. My feet feel like someone is setting a torch to them, my stomach is doing back flips, and my brain is shutting down lobe by lobe. I go into a very dark place inside myself, put my head down and shuffle along, talking myself into one more mile. And then another. I hate this part of the race. For me, this year – with all of the accomplishments and celebrating – has had many 17th miles.

It started last February when a series of experiences brought me to my knees. First, I had dental surgery that left me unable to eat anything but mush for over a month. The lack of food made me irritable, and I started losing weight. Then I had to let go of an employee I cared about, and the transition filled me with worry – for her safety and for the organization. My computer crashed slowly over about four weeks, and I lost the ability to communicate effectively and could no longer rely on this key instrument in critical moments like public presentations. Then my dog suffered a spinal cord stroke that left him completely paralyzed from the rib cage to the hindquarters. We considered putting him down, but decided to rehabilitate him instead – a costly decision with a very uncertain outcome.

As these stressors coupled with some unnerving family issues added their weight to my already weakened state, it felt as if my brain was being hijacked. I have always known that I was vulnerable to mental illness – it runs in my genes – and wondered when it would be my turn. I used to say, “I am on the bipolar spectrum” because I have a chronic case of hypomania but had never been depressed. During these 9 weeks last Spring that changed. First, I couldn’t sleep. I would spend night after night tossing and turning. Then the anxiety got worse, and I just couldn’t stay in the bed because I was so agitated like ants crawling in my skin. I knew what was happening but was completely unable to get on top of it, even with all the best coping strategies at my disposal. Soon, I found I couldn’t eat at all. I have a vivid memory of sitting alone at a Thai restaurant while I was traveling to a conference in Atlanta. I knew I had to eat to have strength for my presentation, but I just couldn’t swallow and sat there trying to choke down a few pieces of tofu in broth filled with sadness. During these weeks, my mind was consumed with catastrophic thoughts about my family and the future of the Carson J Spencer Foundation. I would be driving to work and find myself terrified of getting into an accident, and as a result found I really had to really focus on my breathing to get from one place to another.

Putting the pieces back together Photo by Leopard Print courtesy of Flickr Creative commons

Then two things happened. My doctor give me some medication to sleep and control my anxiety, and I went to the American Association of Suicidology annual conference where I was able to get a better sense of perspective on what I brought to the world that had value. I felt love from my colleagues, valued for my expertise, and connected to something bigger than myself. The tide of the depression started to ebb out of my experience, and now, I am humbled to acknowledge that like so many I have worked to help, I too have a mental illness.

Like others with bipolar, I love my hypomania. I love having tons of energy, creative ideas, and unstoppable drive. The more life I live, however, the more I realize that others are not as keen on this state of being. I exhaust and frustrate people on a regular basis for trying to cram too much in too short a period of time, for living in an adrenaline-filled world of pressing deadlines, and for my lack of understanding of the effect I have on others. In the past, confrontations regarding my behavior often led to defensive reactions, but now, I can no longer deny, I must find a better way.

For me and many others, failure is so hard. I have always put a lot of effort into achieving – one of my blessings and curses. This year during my episode of depression and beyond, I found myself teetering up on the high wire, completely consumed with fear of failure. How could I not succeed doing something I feel I was destined to do, something my entire history has prepared me for, something I am doing in honor of my deceased beloved brother. My drive to overcome this fear snowballed into panic and has rippled through my organization like a cancer. Through many discussions, confrontations and reflections, I have come to accept that I have a classic case of Founder’s Syndrome.

Here is how one author describes it:

“When someone with passion and commitment creates and builds a strong association, members and society benefit. But these founders can turn into their own worst enemies when they refuse to recognize that their organization has “outgrown” them, needing leadership skills the founder does not have or refuses to develop. The result? A nasty case of “founder’s syndrome” or “founderitis.” The cure? A tricky mixture of growth opportunities, board involvement, and a firm delivery method.” ~Maryll Kleibrink, The Center for Association Leadership, December 2004 from http://www.asaecenter.org/Resources/euarticle.cfm?itemnumber=11531

Last week, I had the great privilege to hear Dr. Brene Brown speak at the Women’s Success Forum in Denver. For those of you who have watched her viral TED video, you know she is a researcher on the area of vulnerability. At this forum, she talked about how we can’t opt out of vulnerability – uncertainty, risk and emotional exposure and how daring greatly is about understanding vulnerability as courage.

This week I started something new: Executive Coaching. I am excited about facing these deficits and becoming a better me. I know the weeks ahead will have me taking a long look at difficult things, and I am ready.

Photo by Dru Broomfield courtesy of Flickr Creative Commons

Today, I am grateful for all of this. I am thankful for the courage Dr. Brown has given me to stand imperfectly, accept my challenges and ask for forgiveness from those I have affected. I appreciate my doctor, my medication, and my support system. I value all those who have confronted me in a respectful and solution-oriented way. I am looking forward to learning and changing, knowing that it won’t be easy, but the benefits will be magnificent. Now I feel like I am somewhere at mile 22 – it’s still a tough road but there in the distance is the threshold of hope.

Dr. Sally Spencer-Thomas, CEO & Co-Founder of Carson J Spencer Foundation. International professional speaker on topics of suicide prevention, mental health promotion, and leadership. "As a psychologist, mental health advocate and survivor of my brother's suicide, I see the issues of suicide prevention from many perspectives. As an author and professional speaker I look for new ways to think about how we understand suicide and resilience." www.SallySpencerThomas.blogspot.com

My name is Rosie Lohr. I am currently Mrs. Moses Lake and I am competing for Mrs. Washington, because it is my mission is to bring awareness to the public about invisible disabilities.

I chose the Invisible Disabilities Association as my platform and my charity, because I want to give people with invisible disabilities a voice in Washington state and other parts of America. I desire to help people understand that just because a disability may not be readily visible, they should not be denied what they need and questioned at every corner they turn. It hurts. It is not their fault and they deserve respect and not judgment.

Why am I passionate about this issue? On October 8, 1998 I received a phone call while at work that would change my life forever. The call was from my father who was at work at ASIMS, a chemical plant in Moses Lake WA. I took the call and my father said, “You need to sit down.” My first thought was that something must have happened to my four month old daughter; I began to shake. He told me there has been an explosion at the plant and I needed to get to the hospital now. Jeremy (my husband) had been injured.

When I got to the hospital it was mass confusion and no one had any answers. You see, the small town I live in was unequipped for something like this and they had no idea how to treat the men who were injured. Silicon tetra-chloride gas is a highly volatile and potent chemical that can produce “acute tissue damage” (i.e. any moist areas: lungs, eyes, nose, any sweat). It is an acid and burns these areas.

My husband was air-lifted to Harbor View Medical Center in Seattle, WA. I had to leave my daughter with family and get on a jet from Moses Lake to Seattle. The doctors at our local hospital said he may not make it, because the chemical had burned his lungs and eyes so severely.

Jeremy and Rosie Lohr

After two weeks in the hospital and some touch-and-go experiences, he was sent home on oxygen and so our journey began with his disability. He was diagnosed with COPD and after many years and many prayers he regained his sight and uses oxygen on occasion, but always has it with him.

To look at him, he looks healthy. But he cannot walk up a hill, stairs or do any heavy lifting. He gets winded easily and has a cough that never goes away. We have experienced much discrimination and judgment, because he “LOOKS good!” For example, one time when we parked in an accessible spot, a person came up to us to ask for ID to prove he was disabled. At a concert event, I once had to argue with security to let us sit in the disabled seating. People love to whisper and point when I am carrying the heavy bags of groceries and he is not. They don’t understand that he would if he could! There are so many examples of this I could go on and on.

Cheer for Rosie on January 18, 2014 as she competes for Mrs. Washington at the Maydenbaur Theater in Bellevue, WA. There are 27 contestants from all over Washington.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more!
Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Matt Barrett has lived a life most could never imagine. Matt has battled 11 forms of cancer and four brain tumors since he was just two years old.

As if that were not enough, because his face and body are disfigured by over 1,700 major surgeries, strangers have called him a monster, children have hidden behind their mothers, and store managers have asked him to leave the premises.

It is such a travesty when people are quick to judge Matt from the outside, because they are certainly missing out on getting to know this amazing person.

Animals sense Matt’s gentle spirit.

Despite a lifetime of fighting cancer, being homeless off and on for most of his adult life, and enduring excruciating pain on a daily basis, Matt remains a giving and loving soul.

Ask anyone who knows Matt and they will tell you he is a “Gentle Giant.” At 6 foot 4, over 300 pounds with a love for others as big as he is, his nickname seems fitting.

People on the streets don’t have a clue what they are missing when they fail to talk with this man and give him the respect he deserves. Those who hear about Matt’s journey are not only amazed, but inspired to be more appreciative of what they have.

For decades, doctors have called Matt a “Walking Miracle!” He has lived many, many years beyond anyone’s expectations. This has allowed him to continue his purpose in making this world a better place.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more!
Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Recently, I was a guest on a local TV program hosted by Scott Kaplan and Amber Mesker. It was the first time I had ever been interviewed. I did not realize how simple the set up was, as I expected to see a lot more cameras, lights and noise. It was a simple set and very quiet.

I was asked to come on and tell my story about my accident. When the interview began, I thought it would be about how to motivate people via my story, but instead it was an account of what actually happened. I took a moment in my mind to figure out how to bring motivation to the story, so I referenced the moment when I was put in the ambulance and told Scott and Amber that my thoughts were centered on survival. Instead of laying in a hospital, I’ll be laying in the sun and enjoying the weather.

The way I thought I could motivate people was to tell them that the most important thing when facing tragedy was to tell yourself, “don’t give up. You’ll have your day in the sun if you hold on to life.” After almost thirty years, I still tell myself that same message and find it to be very helpful to me as new challenges and struggles surface.

In conclusion, here’s the message for you, the readers: When difficulty or tragedy strikes, realize that there are many different ways you can respond. The most important thing to remember is that you can tell yourself is that it will be OK. The moment won’t last forever. You are worth more than the price of the trauma!

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

What is a disability? In general, the term disability is often used to describe a physical or mental challenge. This could be a bump in life that can be managed, or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else!

Every person has a purpose, special uniqueness and value, no matter what hurdles they may face. Just because a person has a disability, that does not mean they are “disabled. “ Many living with physical or mental challenges are still active in their work, sports or hobbies. Some with disabilities are able to work full or part time, but may struggle to get through their day, with little or no energy for other things. On the other hand, others may be unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and need assistance with their care.

According to the Americans with Disabilities Act of 1990 (ADA), an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment or is regarded as having such an impairment.

Furthermore, “A person is considered to have a disability if he or she has difficulty performing certain functions such as seeing, hearing, talking, walking, climbing stairs and lifting and carrying, or has difficulty performing activities of daily living, or has difficulty with certain social roles such as doing school work for children, working at a job and around the house for adults.” Statistics show that disabilities affect one-fifth of all Americans.

Often people think the term disability only refers to people who use a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost 1 in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker (Americans with Disabilities 94-95). In other words, 74 percent of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.

The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions, learning differences and mental disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.

In addition, someone who has a visible impairment or uses an assistive device, such as a wheelchair, walker or cane, can also have invisible disabilities. Whether or not a person uses an assistive device, if they are debilitated by symptoms like those described above, they live with invisible disabilities.

My friend Matt Barrett is a real example of someone living with visible invisible disabilities. Matt is 46-years-old and has battled 11 types of cancer since the age of two, including basal cell nevus syndrome, a genetic form of cancer passed down through his family for six generations. He has had over 1,700 surgeries and has lived with unbearable pain and fatigue for decades.

Matt has also been homeless off and on for much of his adult life. Matt is originally from Grand Junction, Colorado and has also lived in Portland, under a bridge in Los Angeles and in what is called “The Hole” in Seattle. Until a year ago September, he lived for three years in a tent in Tent City 3 in Seattle. He has written a book of poetry about being homeless and a blog, both called A View from the Street.

In addition to the battle of illness and being without a home, Matt has also lived with discrimination that most of us cannot fathom. Due to the surgeries Matt has had on his face, he has endured stares, dirty looks and has even has been asked to leave retail stores because he was “scaring” someone’s child.

You would think after a life of being treated this way, that Matt would be a bitter and angry person. However, those who take the time to get to know him find that he is a very kind, loving and giving man. What’s more, they are inspired and their lives are deeply enriched.

Also in 2011, Matt was determined to travel to Colorado to attend the Invisible Disabilities Association’s Awards Banquet and to spend time with a fellow high school classmate – my wife, Sherri. Matt has wanted to attend for many years. After getting more bad news from his doctors about the tumors in his brain, he almost canceled. However, once you know Matt, you know that nothing was going to stop him from coming to Colorado. (He attended this past October for a second year as well).

When we found out Matt would be joining us in person, we immediately re-arranged the evening’s schedule and invited him to be a surprise Special Guest Speaker. Karyn Buxman, IDA Advisory Board member, National Hall of Fame speaker and nurse, gave a brief introduction as Matt approached the stage. Just a small glimpse into his life drove the attendees to their feet when he stepped up to the podium.

Matt briefly shared about his journey and appreciation for IDA’s compassion, awareness and support for him and for others. There was not a dry eye in the house, as lives were changed by Matt’s incredible lifelong story of perseverance in the midst of incredible hardship and pain.

By sharing Matt’s journey, our hope is that his struggles, pain and sheer courage will help us all to look beyond our preconceptions. Let’s not judge others by the way they look on the outside. Instead, let’s give love to one another and find out what they have been through, what they need and who they are on the inside.

Unfortunately, people often do judge others by what they see and jump to conclusions about what they can or cannot do. This can be equally frustrating for those who may appear unable, but are perfectly capable, and those who appear able, but are not.

The bottom line is that everyone with a disability is different – sometimes visibly, sometimes invisibly and sometimes both. They have varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes. Let’s learn to envision a world where people living with illness, pain and disability will be Invisible No More! 2013 here we come!

This article was first published on Disability.Blog by Disability.gov. December 21, 2012.

The show was titled, “A Tick Bite Changed My Life Forever” and was hosted by Nancy Redd.

Holy Toledo! How cool is that! As of today, it has 117,771 views! Although I mention Lyme, the interview is really about ALL living with debilitating illness and pain, no matter what their diagnosis. Most of all, it is about helping friends and family better understand.

The Huffington Post wrote:

Sherri Connell, who suffers from Multiple Sclerosis & Lyme Disease, and her husband Wayne Connell, the Founder & President of Invisible Disabilities Association, joined HuffPost Live to tell Nancy Redd Sherri’s story of contracting her illnesses through a tick bite and how they have turned it into a positive thing by founding an organization to help those with disabilities.

“When I was fourteen I was bit by a tick but at the time I didn’t know it,” Connell told Redd. “But, I started feeling chronic pain soon after.”

“I fell in love with her and we got married in ’94. And in ’96 she coined the phrase, “Invisible disabilities,” said her husband Connell.

Watch the 3 minute show, “A Tick Bite Changed My Life Forever” below! Share it with friends, family and groups to increase awareness and send a message to the media that these are the kinds of articles people want to hear and read about!

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, model in fashion shows, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. Sherri also lives with Chemical Injury, which causes her to be very isolated from family and friends. Her unbearable and disabling pain, fatigue and cognitive disorders are unrelenting 24x7. Sherri desires to help others better understand debilitating conditions, as she shares her story and information about her illnesses. Despite her daily pain and losses, Sherri's writings and videos come to life with her humor and positive attitude. Sherri's journey and struggles for others to understand her disability have inspired her husband, Wayne, to reach out to millions of others like Sherri, through the Invisible Disabilities Association. Sherri is not a medical professional, please seek advice from your doctor before making any changes to healthcare or lifestyle.

Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?

The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain.

We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.

Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.

Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.

Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.

While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.

My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me. When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.

I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS, so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”

Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.

Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!

Imagine the moment of deliverance from need.

Then you can imagine how I felt, looking at that car and noticing it had black interior.

Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.

Get in? No way. But did I have any choice? Nope.

Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”

I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.

Bet I didn’t look so good then.

Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.

I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.

Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.

My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.

Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.

IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Article Excerpt: See what an amazing difference IDA is making with our Annual Honor Awards Banquets. Not only is this an amazing night for attendees, but we share our videos from the evening and article about the Award Recipients to increase awareness, education and support around the world!

In recognition of National Disabilities Month, every October for the past five years, the Invisible Disabilities Association (IDA) has hosted an awards banquet in Lone Tree, Colorado. This year’s banquet will take place on October 14th. This event allows IDA to honor amazing individuals and organizations from around the nation who are making a difference in the lives of people touched by illness, pain and disability. We also feature incredible keynote speakers such as National Speaker Hall of Fame Inductee Karyn Buxman, RN, MSN, CSP, CPAE; New York Times bestselling author Capt. Luis Carlos Montalván and New York Met’s World Series Champion Ed Hearn. This year we invite you to “Join the Expedition.”

Dictionary.com defines an expedition as, “an organized journey or voyage for a specific purpose.” Much time and planning goes into preparing for an expedition. Sometimes it requires learning a new language; sometimes it forges ahead into difficult places. An expedition often requires a map, unless the territory is unknown and uncharted. And of course lots and lots of cool equipment and tools are needed. Finally, an expedition usually requires a partner or a team to go with you, and a group back home cheering you on.

The problem with the expedition of caregiving or living daily with illness and pain is that you rarely have the opportunity to prepare or pre-plan. It just happens! IDA wants to help people to become “expedition ready” even in the midst of the journey.

IDA’s 5th annual banquet will feature Antarctic Mike (Pierce) and his wife, Angela, as keynote speakers. Mike and Angela have been on a very long expedition. Mike is a professional speaker, executive recruiter, avid adventure athlete, world record holder and a husband. Angela Pierce is a wife, a blogger and someone who lives daily with disability and has done so most of her life. Together, they are an amazing team!

Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging, important and worthwhile expedition, that of helping Angela manage her lifetime disability. Read more of their story on Disability.Blog.

The good news is there are a group of people and organizations from around the nation who are journeying alongside people touched by illness, pain and disability. IDA will be honoring them on this great evening. IDA honorees include:

2012 Advocacy Award Honoree: Suzanne Mintz has been chosen based on her passion and advocacy as the founder of the National Family Caregivers Association. She has set the example for others by caregiving for her husband, Steven, who is living with Multiple Sclerosis. She has used her experience to inspire and advocate for other caregivers.

2012 Caregiver Award Honoree: John O’Brien has been chosen based on his passion and commitment to personally care for his wife and her journey with illness. This passion for people living with illness and pain also moved John to co-found Central Coast Senior Services, a home care agency which provides professional and compassionate caregiving.

2012 Corporate Award Honoree: Debbie Marriott Harrison has been chosen for her personal journey as a caregiver and champion of those living with invisible disabilities, including her own children. In addition, Debbie is an example for others in her role as Senior Vice President of the Marriott Corporation, a company that is leading the way with a disability-friendly atmosphere for both their guests and employees.

2012 Founders Award Honoree: Dick Layton has been chosen based on his personal involvement with IDA’s founder Wayne Connell as a mentor and as a strategic advisor to the entire IDA organization. Dick uses his passion to help others by making a difference in their lives and their organizations and therefore multiplying his impact and reach. Dick Layton is a currently a Managing Partner at Kenton Talent Management.

2012 Healthcare Award Honoree: Kermit Crawford has been chosen based on his leadership role at Walgreen’s as the President of the Pharmacy, Health and Wellness Services and Solutions and his focus on the wellbeing and health of all Americans. Kermit has led Walgreens in the development of programs and services such as the Take Care Clinics, Health Corner TV, Health Screening Tours and the Walk with Walgreens initiative.

2012 Impact Award Honoree: Jan Chambers has been chosen based on her desire and passion to positively impact people living with fibromyalgia and pain through her work as the President of the National Fibromyalgia & Chronic Pain Association.

2012 Inspiration Award Honoree: Bob Woodruff has been chosen because as a traumatic brain injury (TBI) survivor he inspires others with TBI to keep fighting and to use their challenges and triumphs to help encourage others. Bob founded the Bob Woodruff Foundation to honor and encourage veterans, as well as service men and women living with invisible disabilities. Bob is an amazing inspiration and is making a difference in the lives of others.

2012 Invisible Hero Award Honoree: Anna Bigham has been chosen based on her work as the founder and executive director of the nonprofit organization Hidden Wounds. After enduring the tragic loss of her brother, Anna has dedicated her life to serving military personnel living with invisible disabilities by bringing them hope and inspiration.

2012 Medical Award Honoree: Dr. Marshall Thomas has been chosen based on his passion to provide exceptional clinical care and research for patients living with mental health disorders through his leadership as the Executive Director of the University of Colorado’s Depression Center. Under his guidance, the Depression Center has become a recognized leader in research and treatment of depression, as well as a much needed community resource for health professionals and the public about mood disorders.

2012 Perseverance Award Honoree: Angela Pierce has been chosen based on her amazing perseverance as she lives each day with illness from childhood, ongoing long term pain and life threatening injuries caused by a major climbing accident 27 years ago. In addition, despite her circumstances, Angela shares her story, as well as her struggles and triumphs, in order to encourage others in person and through the internet.

2012 Research Award Honoree: Envoy Medical Corporation has been chosen based on its cutting edge research, and the creation of the Esteem®, an implantable, invisible, prosthetic hearing restoration device.

2012 Volunteer Award Honoree: Frances Owens has been chosen based on her lifelong, passionate volunteerism with multiple charities serving people living daily with illness and disability, as well as for those recovering from tragedy. Frances’ current work with Developmental Pathways and the HeartLight Center is inspiring. Her volunteerism with Anchor Center for the Blind, Recording for the Blind and Dyslexic, The Children’s Hospital, The Colorado Autism Society, women’s heart health and Denver Health’s Newborns in Need is an example to be followed.

We hope you “Join the Expedition” with us this year in Denver. We believe we all need each other, and even though the journey can be difficult and lengthy, it can be endured with the help of others. IDA will continue to take the lead and provide support and guidance along the way. To register or learn more about the banquet, please go to www.JoinTheExpedition.org.

This article was first published on Disability.Blog by Disability.gov. September 19, 2012.

Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.

Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.

As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.

“Angela and I have been married for almost 21 years. To most people, she is a very ‘normal’ looking young lady. Of course, I think she’s much prettier than average (ha ha). She drives a car, reads, has friends, is not missing any limbs, is not in a wheelchair and seems able to perform the functions of daily living, like most of us. If you were in a conversation with her or sitting next to her, you’d probably see her like any other woman her age.

Because she looks healthy, you’d likely think she was a working professional; probably a mom; someone who enjoys traveling, sports and other activities in which most people participate.

However, looks can be deceiving. You see, the truth is that Angela survived a 125 foot freefall in a rock climbing accident, breaking her bones in 168 places and requiring more than 40 surgeries. She has hepatitis C from a blood transfusion, a pituitary mass in her brain, Post Traumatic Stress Syndrome (PTSD), kidney failure, has been on dialysis and the organ transplant list and takes more medication than most households do. On the outside, Angela looks just fine.

On the inside, she’s challenged beyond description. The difficulty is that her disabilities are completely invisible, unless you see her compound fracture scars and the skin graph on her legs.

One thing I’ve learned during our 21 years together is that she has different needs and communicates about what those needs are in a very different way than I would have ever expected. During the early years of our marriage, we would fight loudly more often than I’d care to remember or admit. She would get very upset at me over things that I had not done and things I did not understand. I took those comments personally and took my shots back at her, fueling the fire further. I’ve thrown telephones, cereal boxes and other things across the room in anger. One night in a parking lot outside a bowling alley in Denver, a police officer overheard our arguing and came up to ask us if we were okay. We calmed down quickly after that.

What both of us learned after many of these arguments is that what Angela was initially upset about was not the real issue. It was something else that was related to the difficulty of living with various invisible disabilities. It was not me, anything I said or did, but what she was going through. We did not realize that we needed to grow in our ability to speak and understand a different language. I’m talking about the language of invisible disabilities.

It’s not an easy language to understand, as you have to think, be very patient, not take comments personally, listen more and not try to answer questions and solve problems immediately. Often, people with disabilities or chronic pain just want to talk in order to express themselves and let out the pressure that builds up inside them. Questions they ask, comments they make and issues that seem to bother them are not necessarily the genesis of the problem. That’s okay. I’ve learned to just let Angela get it out without me interrupting her, fixing her or commenting. This takes tremendous patience and self confidence on my part, as the knee jerk reaction is to take things too personally, wondering what I did or said wrong.”

The expedition will be long and tough, yet rewarding, as Mike has shared. The language will sometimes be somewhat familiar and other times very different. The best teachers of this language of invisible disabilities are those like Angela and my wife, Sherri, who live daily in the land of illness and pain. Learning the language is the first step to becoming expedition ready. Join the expedition!

This article was first published on Disability.Blog by Disability.gov. March 14, 2012.

MEET ANTARCTIC MIKE AND ANGELA! Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

Antarctic Mike (Mike Pierce) is a professional speaker, managing partner in a recruiting company, an avid adventure athlete, and a husband to Angela, who lives daily with disability due to a rock climbing accident. Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging and important marathon, that of helping Angela manage her lifetime disability.

Shining a Light on the Incredible Perseverance and Courage of Those
Living with Illness and Pain.

It all came crashing down in 1991. First, her legs became paralyzed and then, she received a diagnosis of primary progressive multiple sclerosis (MS), followed by a 10 day hospital stay. She slowly regained the use of her legs, yet the bone-crushing pain, fatigue and cognitive impairments did not dissipate.

We met in 1992. Sherri was a customer of mine at an electronics store I was managing. Wow, was I smitten. We met again at a singles group at her church; all of the guys were surrounding her. Did I even have a chance? Afterwards, everyone went out together to a local restaurant. I, of course, sat across from her. All of the other guys who had been interested in her disappeared when they heard the words, “MS” and “Disabled.” Sherri figured she would tell me the truth right away, and maybe save her the pain of another relationship lost.

I was not deterred. I was falling head over heels in love. She had been a model, a beauty queen, an actress, a singer with the voice of an angel, a cheerleader and someone everyone liked and looked up to. To me, she was still all of these and more. She was funny and intelligent, earning three college degrees, drop dead gorgeous and caring and loving of others.

Shortly after we started dating in 1992, Sherri was also diagnosed with Late Stage Chronic Lyme Disease, which was traced back to when she was bitten by a tick while visiting Arkansas at the age of 14. She had been sick on and off since then, but no one knew why. She was still active, passionate and hard working until her body finally gave out when she was 27 years old in 1991.

We were married on September 4, 1994. We were in love. She started writing about her journey in pamphlets. She wrote about MS to help explain to family and friends about her illness. She wrote about how people didn’t understand why someone who appeared normal was allowed to park in disabled parking. She wrote about how appearances do not always tell the story on the inside. In 1996, she finally thought of a label that described her condition – she had an, “Invisible Disability.” I thought, “Wow! Your description really makes since!” Soon thereafter, I took some of her writings and posted them on a website, called The Invisible Disabilities Advocate.

Therefore, in 1997, the Invisible Disabilities Association (which was originally called The Invisible Disabilities Advocate) was launched. I had no idea that hundreds of thousands of people from around the world were dealing with their illnesses and pain, and how people did not understand and in many circumstances, believe that they had a disability because of the invisible nature of their symptoms.

Along with my wife, I wrote the booklet, “But You LOOK Good – How to Encourage and Understand People Living with Illness and Pain.” IDA has sent more than 21,000 copies worldwide. Our organization continues to grow and support people from around the world with a message of understanding and encouragement; and IDA comforts those living with illness and pain by letting them know that they are not alone. IDA is also educating families, friends, co-workers and caregivers that even though a person’s symptoms may not be visible, they are very real.

IDA reaches around the globe with stories of suffering and triumph. We created www.InvisibleDisabilitiesCommunity.org as a supportive place to share the difficulties and to encourage people touched by illness, pain and disability. Our organization recently launched our second YouTube channel, www.InvisibleNoMore.TV, which brings to life the journeys of many living with invisible disabilities.

“Believing a loved one when they say they are sick or in pain is the most important thing we can do. Just because we can’t see from the outside, what they are battling on the inside doesn’t mean it doesn’t exist. Belief, validation and support can give a friend or family member the strength they need to continue the fight!”

Take the time in this New Year to encourage and believe a loved one living with illness and pain. Do not allow them to live in isolation anymore. As a society, we need to love first. Join IDA in envisioning a world where people living with illness, pain and disability will be INVISIBLE NO MORE(SM).

This article was first published on Disability.Blog by Disability.gov. January 4, 2012.

JOIN US IN DENVER ON OCTOBER 14, 2012. IDA wants you to “Join the Expedition.” Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more. Visit us at: www.InvisibleDisabilities.org

Through the project, Invisible No More! the Invisible Disabilities Association is bringing awareness, compassion and belief to millions living with debilitating conditions, shining a light on the “invisible” and making these valuable, incredible people Invisible No More!

This video features the story of Leeza Gandley who lives with Dysautonomia, CFIDS and other complications. Leeza was a student of Pharmacy (Pharm D. Program) and Medicine (M.D. Program) before she became sick and had to leave school before completing her studies. Leeza shared, “Now I utilize that knowledge in navigating the healthcare system — not only for myself, but also as a Patient Advocate for others.” Visit Leeza’s YouTube Channel, She Who Feels.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more!
Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Jose found out one of his employees, Wendy, lives with Fibromyalgia. Wendy told Jose when he was under cover that she felt like she had lost her smile, due to damage from medications she uses for Fibromyalgia. Jose not only gave her the time off to get her teeth fixed, but said he was also willing to pay the full costs to get them fixed, no matter if it totaled $20 – $25,000.

Wendy’s husband also works for MasTec and she had shared with Jose that they are struggling with $30 – $35,000 in debt. So, Jose gave them $30,000 to pay off their current debts.

Jose told Wendy, “I am going to give you $30,000 so you can feel good about having your teeth done and don’t have to feel that is taking away from something else.”

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more!
Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

One of FASTSIGN’s employes, Sheldon, is engaged to be married. His fiance, Michelle has battled cancer, a collapsed lung and has undergone radiation and chemo. Sheldon shared when Catherine was undercover that they are struggling financially to afford a wedding and to pay her medical bills.

At the end of the show, when Catherine revealed her identity, she told Sheldon she wanted them to have the “Honeymoon of your dreams.” She gave them $10,000. Catherine brought up Sheldon’s loyalty to Michelle and he said, “That’s what you sign up for. For better or for worse.”

Catherine told him that she wanted to also give him $50,000 to pay their medical bills. She said, “It would be my dream that I could sometime in my future find a man who would stand by me, like you’ve stood by Michelle.” Sheldon replied, “Well, everyone should have somebody like that.”

Catherine also gave $15,000 to one of her employees, Scott, so that he and his wife, Julie can spend more time at home with Julie, who has Multiple Sclerosis and their daughter Maya. She also gave them $10,000 to help with future college expenses for Maya.

Catherine’s brother, Charles Monson, was in a surfing accident when he was 16 years old, which resulted in a broken neck and paralysis from the shoulders down. Charles is the Founder of Wheels of Mercy, a non-profit organization that provides wheelchairs and walkers to those who need them!

Thank you, Catherine, for being so giving to your employees! And, thank you, Charles, for reaching out to help others in need!

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more!
Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Teresa is there to raise money for her charity, The NephCure Foundation (NFC), which researches the cause, improved treatment and cure for the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome.

“Teresa first encountered The NephCure at a charity event when she met a young boy who was suffering from an incurable kidney disease. As a mother herself, Teresa was emotionally affected by this boy’s story and was shocked to learn that the cause of many kidney diseases is still unknown” (Celebrity Apprentice).

The Invisible Disabilities Association (IDA) has had direct experience with two amazing men battling FSGS, Ed Hearn and Jason Graham.

On the April episode of Celebrity Apprentice, Teresa became the Project Manager. The task was for the two teams to create a a 60 second commercial for Entertainment.com. She won $20,000 from Celebrity Apprentice and $30,000 from Entertainment.com.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more!
Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

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IDA Awareness

In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness and value, no matter what hurdles they may face.
In addition, just because a person has a … [LEARN MORE]

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